Heart failure (HF) is a chronic condition with high incidence and prevalence in the western world. One of the most recent population studies found that the prevalence of HF ranges between 1.2% in the population aged 66 to 69 years and 6.6% in people 85 years or older.1 Aging and improvements in treatment of cardiovascular disease have increased the prevalence of HF, and a further increase of 46% is projected by 2030.2
Significant improvements in HF treatment have been made, but outcomes remain poor.3,4 Self-care is the primary skill available to patients to improve their HF outcomes.5 A recent systematic review with meta-analysis demonstrated that self-care is effective in improving quality of life and reducing hospitalizations and mortality in patients with HF.6 Unfortunately, self-care remains insufficient in many patients worldwide.7 Some of the factors related to poor self-care include lack of experience, skill, and motivation.8 Habits, cultural values, and self-efficacy influence the self-care behaviors used by patients with HF.7 Informal caregivers (ie, the patient's family members, relatives, and friends) are important contributors to self-care of patients with HF, and these caregivers are the focus of this theory.
Recent studies have emphasized that HF self-care is a dyadic phenomenon.9–12 That is, patient self-care influences caregiver contributions to self-care, and vice versa. Despite this, unique and individual contributions by caregivers in the self-care process are identifiable, even when statistical methods (eg, multilevel modeling) are used to control for interdependence within the dyad. The recent Theory of Dyadic Illness Management13 emphasized the dyadic role of chronic illness management; however, the same theory emphasizes the importance of congruence within dyadic appraisal and management of chronic illnesses that actually requires an examination of individual patient and caregiver appraisal and patient and caregiver management.
A recent state-of-the-science review emphasized the importance of using theoretical and conceptual models in research on caregivers of patients with HF.14 In this article, we describe the development of such a theory, which we hope is useful in guiding future research and clinical practice involving HF caregivers. Here, we describe a situation-specific theory of caregiver contributions to HF self-care. This is a situation-specific theory because the aim is to describe factors related to the contributions of caregivers to this particular population of patients performing HF self-care.
From Where We Started
In 2009, we started a program of research with the aim of describing HF self-care in the Italian population.15 Early on, we understood the importance of considering the Italian context as it influences caregiver contributions to HF self-care. Italy has one of the oldest populations in the world, and Italian patients with HF are mainly older adults with many comorbid conditions.16 Thus, the care given to these patients is mainly from their caregivers rather than from patients. Early on, we developed and tested the Caregiver Contribution to Self-care of HF Index (CC-SCHFI),16 which measures the extent to which caregivers contribute to HF self-care, either by recommending to patients with HF that they perform self-care (eg, exercise) or by substituting for some patient behaviors in case he/she is not able to do so (eg, preparing low-salt foods for the patient). As of October 2018, the CC-SCHFI had been translated into 9 foreign languages, and the paper reporting the development of the instrument had been cited 45 times in Scopus and 52 times in Google Scholar.
The development of the CC-SCHFI stimulated several studies. These studies and others conducted on HF caregivers have provided the evidence used to build this theory. Specifically, these studies have allowed us to identify the process by which caregivers contribute, which is the core of the theory, the factors that predict caregivers' contributions to HF self-care, and the outcomes of caregivers' contributions to HF self-care.17
Assumptions of the Theory
We approached theorizing about caregiver contributions to HF self-care with several assumptions in mind. The first assumption is that caregivers want the best for their loved ones.18 We also assume that patients want the attention of their caregivers,19 but we acknowledge cultural differences in this assumption. For example, in Italy, patients expect caregivers to take care of them.20 In the United States, an ethnically diverse population, such familial obligation for caregiving is not universal.21 Presumably, other cultures differ in these expectations as well. We also assume that the quality of the relationship between the patient and the caregiver influences the caregivers' willingness to contribute.22 The nature of the relationship (eg, spouse, child, sibling, or friend) also influences the caregiver's willingness to contribute and the patient's willingness to accept caregiving.9 Finally, we assume that patients and caregivers influence each other.23 These assumptions are based on data and reflect our perspectives as we approached this topic.
The Process by Which Caregivers Contribute to Heart Failure Self-care
In the original paper describing the development of the CC-SCHFI, we defined caregiver contributions to HF self-care as “the provision of time, effort, and support in the behalf of another person who needs to perform HF self-care.”16 (p246) We stated that when caregivers contribute to HF patient self-care, they “adapt their behaviors to the patient's ability to perform self-care.”(p246) For example, caregivers may recommend that patients with HF perform certain self-care activities (eg, physical activity) or they can substitute for the patient in cases where he/she is unable to do so. In many cases, patients with HF experience fatigue,24 and caregivers can substitute for the patients by preparing low-salt foods or setting out medications. In this article, we provide more depth to this definition.
Many caregiver contributions to HF patient self-care mirror those of patients, as specified in the Situation-Specific Theory of HF Self-care.25 In this parent theory, self-care is defined as “a naturalistic decision-making process that influences actions that maintain physiologic stability (self-care maintenance), facilitate the perception of symptoms (symptom perception), and direct the management of those symptoms (self-care management).”25 (p226) Here, we further define caregiver contributions to HF self-care as the process of recommending to (or substituting for) the patient to perform those behaviors that help to (1) maintain stability of HF conditions (caregiver contribution to self-care maintenance), (2) facilitate HF symptom monitoring and perception (caregiver contribution to symptom monitoring and perception), and (3) respond to the signs and symptoms of an HF exacerbation when they occur.
An element of our theory that differs from the patient theory is the language of symptom monitoring and perception. We combined these concepts because symptoms are not perceived unless they are monitored, and caregivers do not perceive the symptoms themselves. Caregiver activities related to symptom monitoring consist of “watching” for HF symptoms (eg, breathing, swelling, weight gain).26 Caregiver activities consist of recommending (or substituting for the patient) in monitoring symptoms, recognizing, and interpreting symptoms as related to HF. Caregivers have been found to contribute to patient self-care better than the patients in some situations.27 Thus, caregivers provide an important resource for self-care, especially when patients are not completely autonomous in activities of daily living or are cognitively impaired.28
In patients, the 3 dimensions of self-care maintenance, symptom perception, and self-care management occur in sequence; mastery of self-care maintenance precedes mastery of symptom perception, which occurs before patients master self-care management.29 However, in caregivers, we do not know yet if this process is sequential. That is, we do not know if caregiver contributions to self-care maintenance influence their abilities to monitor and perceive symptoms. And, we do not yet know if symptom monitoring and perception influence caregiver contributions to self-care management. It could be that the above dimensions of self-care influence each other11,30 but without a specific sequence. Chen and colleagues31 demonstrated that caregiver contributions to self-care maintenance influenced caregiver contributions to HF self-care management. But we cannot comment precisely on the relationships among the 3 concepts of self-care maintenance, symptom monitoring and perception, and self-care management because much of the research was done with an early version of the CC-SCHFI. In that version of the CC-SCHFI, symptom monitoring was embedded in the self-care maintenance scale and symptom perception in the self-care management scale. We know only that the path from self-care maintenance to self-care management was statistically significant. Further research is needed pulling these processes apart and examining them in longitudinal research.
In a qualitative study (under review), we found that caregivers may be reminding patients to take their medicines (self-care maintenance), commenting on symptoms (symptom perception), and suggesting specific approaches for symptom management (self-care management) simultaneously. We did not investigate why, how, or when caregivers performed these behaviors, but it appeared that caregivers were commenting based on patient need, not caregiver mastery of the content. Further research is needed to clarify these issues. For now, we feel confident in saying that caregiver contributions to HF self-care maintenance, symptom monitoring and perception, and self-care management influence each other in some manner (Figure). Further research is also needed to determine if caregivers use a naturalistic decision-making process when deciding about their contributions. Patients are said to use such a process,25 but we do not know if caregivers use a similar process.
Important Factors Influencing Caregiver Contributions to Heart Failure Self-care
Confidence is one of the most important factors influencing caregiver contributions to the self-care of patients with HF. Caregiver confidence is defined as the belief of caregivers in their ability to assist patients with HF self-care. Caregiver confidence is not a specific contribution to self-care behaviors, but it reflects self-efficacy regarding the ability to contribute (eg, feeling confident in the ability to recognize the patient's HF symptoms). In this theory, confidence is proposed as a total or partial mediator or link between most of the predictors of caregiver contributions to HF self-care and the contributions themselves. However, some contributors may not be mediated by caregiver confidence32 (Figure). Knowledge about HF increases the caregiver's confidence and thereby improves his/her contributions.32 Regarding patient- and dyad-related contributors, we do not have strong evidence yet, but a previous study found that caregiver confidence was better when patients with HF had lower education and better cognition, and there was a better perceived relationship quality in the dyad.20 The mediating role of caregiver confidence between patient- and dyad-related contributors and the contributions themselves still needs to be investigated.
The influence of confidence could be total or partial. If totally mediated, predictors affect caregiver contributions to HF self-care only through their effects on confidence. If partial, predictors influence caregiver contributions to HF self-care directly and also through their effects on confidence. These mechanisms were demonstrated empirically by Chen and colleagues,32 who found that caregiver confidence totally mediated the relationship between HF knowledge and caregiver contributions to self-care maintenance and partially mediated the relationship between HF knowledge and caregiver contributions to self-care management. However, in the same study, caregiver confidence did not mediate between perceived control and social support and caregiver contributions to HF self-care maintenance and management. This result demonstrates that caregiver confidence does not always mediate the process of HF self-care.
Another important factor that strongly influences caregiver contributions to HF self-care is culture. Culture is defined as the values, beliefs, and norms that we learn from others.33 These values, beliefs, and norms influence both health and caregiving behaviors. For example, in a study conducted in rural Canada, patient and caregiver contributions to HF self-care related to seeking help from health professionals in case of HF symptom worsening were influenced primarily by cultural values emphasizing the importance of continuing to work by the men and keeping a tidy and well-kept home by the women.34
Many cultural values reflect underlying religious beliefs. Authors from Uganda, Denmark, and the United States describe self-care and the process of moving healthcare for chronic illness from clinic to home as “chronic homework.”35 One example of chronic homework by a family in the United States describes the influence of a particular religious sect (Jehovah's Witness) that influenced their willingness to accept medical treatments. The family believed that it was up to God to provide a cure and refused to engage in self-care. In Chinese culture, influenced by Confucianism, caregiving for an ill family member is considered a moral obligation.36 In Italy, strongly influenced by Catholicism, caregivers have a profound sense of family duty, which influences their contributions to patients' self-care.37 These cultural values strongly influence health behaviors such as eating patterns, beliefs about medication taking, the meaning of symptoms, and the appropriate response to symptoms when they occur. We theorize that caregiver cultural values are moderators in this theory as was shown in other populations.38,39 That is, all the paths proposed in the theory are influenced by caregiver cultural values (Figure).
Known Predictors and Outcomes of Caregiver Contribution to Heart Failure Self-care
With the available evidence on caregiver contributions to HF self-care collected with the CC-SCHFI, we already know several of the factors that influence the contributions provided by caregivers to HF self-care. These factors are caregiver related, patient related, and dyad related (Figure). We also know something about the outcomes of caregiver contributions of HF self-care. We know that outcomes may be caregiver related and patient related and they may be both positive and negative. What we know is summarized below.
Attributes and personal characteristics of caregivers are powerful influences on the ability to contribute to the self-care of another individual. Some of the characteristics identified at this point include caregiver knowledge, skill, perceived control, confidence, support from others, education, and level of anxiety, as documented in detail below. Presumably, there are others.
The caregiver's knowledge about HF is an important factor influencing his/her ability to contribute to the patient's self-care.40 Knowledge and skill in HF self-care contribute to mastery, defined as the ability to respond to a difficult situation, which increases competence and control of stressful situations.41 Caregivers have significant knowledge deficits regarding how to manage HF.42 Many HF caregivers report feeling unprepared to help.43,44 Caregivers who are not prepared to contribute to HF self-care have low levels of perceived control.45 They feel fearful, worried, and uncertain about how to help.45 Low perceived control is an important determinant of depression in HF caregivers.46 Perceived control is difficult to change; even when perceptions of the caregiving experience improve over time, perceived control may not change.46,47 However, increased caregiver participation and collaboration can increase perceived control and improve self-care.47 Social support also contributes significantly to the ability of family caregivers to contribute to HF self-care.48
Buck and colleagues28 analyzed the influence of caregivers' anxiety and depression on their contributions to HF self-care and found that when caregivers had greater anxiety, they contributed poorly to HF patient self-care management. To date, we do not have evidence that caregiver depression decreases their contributions to HF self-care.
Another group of factors influencing caregiver contributions to HF self-care are patient related. That is, depending on some patients' characteristics, caregivers contribute more or less to HF self-care. The available evidence illustrates that caregivers contribute more to HF patient self-care when patients have lower education, better cognition, longer HF duration, and fewer comorbid conditions.11,47,49 Even though we do not know yet the reasons for these relationships, several explanations can be suggested. The mechanism underpinning the relationship between lower formal patient education and higher caregiver contributions to HF self-care may reflect a situation where the patient with less education is unable to manage the illness well, and consequently, the caregiver intervenes to compensate for this deficit. Better patient cognition is another predictor of higher caregiver contributions to HF self-care. Actually, evidence of this relationship comes from a cross-sectional study,50 and we do not know yet if better patient cognition predicts better caregiver contributions to HF self-care, or vice versa. Longer HF duration was found to be associated with better caregiver contributions to HF self-care, perhaps because caregivers develop more mastery in promoting HF self-care over time. The relationship between patient comorbidity and caregiver contributions to HF self-care may reflect what we have already found in the patients: more comorbid conditions impair patient self-care50 because they have more prescriptions and more restrictions as the illness state becomes more complex. The same issues may be experienced by caregivers so that, when patients have more comorbid conditions, caregiver contributions require management of overlapping symptoms and numerous self-care requirements.
Here, we refer to all those factors that reflect the interaction between the patient and the caregiver. Mutuality, defined as the positive quality of the relationship between a caregiver and a care receiver, has been found to influence caregiver contributions to HF self-care.51 In chronic conditions, high mutuality between caregivers and patients was associated with reduced caregiver stress, strain, and depression and improved patient anxiety and quality of life.51 In HF, only 2 studies have considered the relationship between mutuality and caregiver contributions to self-care.12,52 The first study demonstrated that higher mutuality predicted better caregiver confidence in contributing to HF patient self-care.12 The second study showed that higher caregiver mutuality predicted higher caregiver confidence and higher patient mutuality predicted higher caregiver contributions to HF self-care management.52
Quality of the relationship is another important dyadic factor influencing HF self-care. When the relationship between the caregiver and the patient is better, caregiver contributions to HF self-care are better as well.28
Another dyadic factor is the nature of their relationship (eg, spouse, child, relative, or friend). We found that when the caregiver is a spouse, his/her contribution to HF self-care was lower than that of a child or someone in another relationship.9,11,12 However, other investigators have found the contrary,53 so further research is needed to clarify this issue.
Shared decision making is another element of the dyadic relationship that is related to HF self-care.53 Elements of communication and reciprocity improve self-care confidence and decision-making in dyads.47
Caregiver and Patient Outcomes of Caregiver Contributions to Heart Failure Self-care
Outcomes of caregiver contributions to HF self-care are understudied and evidence that caregiver contributions change patient and/or caregiver outcomes is poor. However, outcomes of caregiving have been studied in many other populations.54–57 Based on these studies, we hypothesize that the outcomes of caregiver contributions to HF self-care may be both positive and negative.
Regarding the positive outcomes of caregiver contributions to HF self-care, from other caregiver populations (eg, cancer) we have evidence that taking care of another person, recommending care for him/her, and substituting when he/she in unable to take care of him/herself stimulates personal growth and improves caregiver self-esteem, satisfaction, and reward.58,59 However, at the same time, caregiver contributions to HF self-care could be burdensome. In fact, at this point, we have little evidence of caregiver satisfaction but some evidence of burden in caregivers of patients with HF.28,60,61 We need more research in this important area.
Caregiver contributions to HF self-care could also result in both positive and negative patient outcomes. In a recent study, we found that caregiver contributions to HF self-care maintenance improved patient event-free survival, but caregiver contributions to HF self-care management did not benefit survival.28 In that paper, we commented that greater caregiver engagement in responding to signs and symptoms of exacerbation (self-care management) may reflect impending decompensation, which is associated with higher mortality rates.28 However, more research is needed before we can understand these findings better.
Better caregiver contributions to HF self-care probably can improve patient quality of life and lower hospitalization rates. However, being reminded continuously to behave in a certain way or having another person substitute effort in performance of some activities may feel like criticism, which could make patients feel angry or dependent.
Feedback Loops in the Process of Caregiver Contributions to Heart Failure Self-care and Outcomes
As shown in the Figure, we propose pathways that loop back to influence the process of contributing to HF self-care and outcomes. That is, the process of contributing to HF self-care generates patient and caregiver outcomes. But, at the same time, the outcomes influence the process as well. This recursive process may be influenced by caregiver and patient outcomes. If caregiver and patient outcomes are positive, for example, the caregiver is satisfied by contributing to patient self-care, this satisfaction can reinforce the process of self-care and motivate the caregiver to contribute more. However, if caregiver outcomes are negative, the caregiver may feel burdened by caregiving and be less motivated and less proficient in contributing to HF self-care.
Something similar may occur in patients. In cases where patients have an improvement in quality of life, thanks to caregiver contributions to HF self-care, this positive outcome can reinforce caregiver contributions to HF self-care. But, in cases where patients have worse outcomes, for example, they are not satisfied about the care received, this could generate a lower interest and willingness in caregivers to contribute to patient self-care.
Recursive feedback loops are not new in theories of caregivers and the management of chronic conditions. Lyons and Lee,13 in their Theory of Dyadic Illness Management, theorized that dyadic appraisal of the illness by patients and their care partner influenced their management behaviors in dealing with the illness. Further, management behaviors were said to influence their appraisal. Also, Lyons and Lee theorized that dyadic appraisal and management behaviors influenced dyadic health and dyadic health recursively influenced management behaviors. Because our theory is situation specific, we have specified which specific elements of management behaviors are involved in the process (ie, caregiver contributions to self-care maintenance, symptom monitoring and perception, and self-care management), and we have specified that the outcomes achieved may be positive and/or negative.
We present 10 propositions to the theory based on the material presented above.
- Caregiver-, patient-, and dyad-related factors influence caregiver contributions to HF self-care.
- Caregiver confidence may mediate, totally or partially, the relationship between predictors of caregiver contributions to HF self-care and the process of self-care.
- Culture moderates the relationships among predictors of caregiver contributions to HF self-care, the process of caregiver contributions to HF self-care, and the outcomes of caregiver contributions to HF self-care.
- Effective symptom monitoring and perception requires more caregiver skill than effective self-care maintenance.
- Caregiver contribution to self-care maintenance, symptom monitoring and perception, and self-care management influence each other.
- The process by which caregiver contributions to HF self-care influence caregiver and patient outcomes can be either positive or negative.
- Caregivers in congruent dyads (ie, those in which patients with HF and their caregivers are similar in focus) will have better confidence in their ability to manage HF; in turn, better confidence will determine better caregiver contributions to self-care.
- The relationship between caregiver contributions to HF self-care and patient and caregiver outcomes is recursive, meaning that the process of contributing to HF self-care influences patients' and caregivers' outcomes. Patient and caregiver outcomes influence the process of caregiver contributions to HF self-care as well.
- Positive caregiver and patient outcomes encourage caregivers to contribute in better ways to HF self-care, but negative caregiver and patient outcomes negatively influence caregiver contributions to HF self-care.
- Positive and negative patient outcomes in response to caregiver contributions can coexist.
How Caregiver Contributions to Heart Failure Self-care Can Be Measured
Two psychometrically sound instruments are available to facilitate research testing these propositions.16,26 The CC-SCHFI, freely available on the website www.self-care-measures.com, measures the perception of caregivers regarding their contributions to self-care maintenance and management and caregiver confidence.16 In the current version, the dimension of symptom monitoring and perception is embedded in the self-care maintenance (symptom monitoring) and self-care management (symptom perception) scales. We are currently testing a new version of the CC-SCHFI (version 2) with a separate scale measuring symptom monitoring and perception. The Caregiver Contribution to Heart Failure Self-care has 3 distinct scales and measures the dimensions of self-care maintenance, self-care monitoring, and self-care management.26 Another instrument useful in caregiver research is the Caregiver Preparedness Scale, which has been tested in HF caregivers.44
The Situation-Specific Theory of Caregiver Contributions to HF Self-care is still in its infancy, and more research is needed to provide stronger evidence supporting the theory. However, since more and more studies have been published on this topic, we think that a theory could guide future studies and help the scientific community to aggregate knowledge. At this point, we recommend that other investigators test the propositions of this theory to help develop the science in this specific field. Because patients with HF and caregivers influence each other, we recommend the adoption of statistical techniques that allow control of the interdependence within patient and caregiver dyads.
What's New and Important
- The Situation-Specific Theory of Caregiver Contribution to HF Self-care is a new theory describing the process by which caregivers contribute to HF self-care; this process includes the dimensions of caregiver contributions to self-care maintenance, symptom monitoring and perception, and self-care management.
- Predictors of caregiver contributions to HF self-care are caregiver, patient, and dyadic related. The outcomes are caregiver and patient related and may be positive and/or negative;
- The Situation-Specific Theory of Caregiver Contribution to HF Self-care can guide future research on HF caregivers and help guide clinical practice to improve HF self-care in both HF caregivers and patients.
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